My husband is not the man I married 40 years ago. Any advice?
My husband (67) has always been what some people refer to as scatterbrained, being late for plans or appointments, forgetting to pay bills eventhough he had plenty of money in the bank. When I first met him, I couldn't believe what a mess his house was, mostly because of too many animals. Because I was blindly in love, I paid no attention to these personality traits. But after we were married and had kids, I couldn't help but notice some of the things he did that popped up a red flag. He once left our 3 year old in the tub alone in the house while he went down the road to check on something. I was gone to my mothers. I think that was the first actual event when I realized he had a strange way of thinking. As one event after another occurred, I realized after our daughters left for college, something was seriously different. He had trouble remembering things I told him I needed at the store even if it was just 3 items. He is a pastor and the whole congregation is starting to notice his short term memory is lacking. He forgets the order of the service eventhough he has the church bulletin right in front of him, he skips verses of the hymns, and he repeats part of his sermon. He has seen a neurologist and had an MRI, and nothing showed up. He could not repeat the 3 items on the recall test, back to the doctor so she labeled him as having mild cognitive impairment. However, I don't think that's what it is. He says he has always done that when put on the spot. We get into argument daily because of his inability to comprehend what I tell him. He says he hears me but just doesn't understand the words. I often have to repeat things 4 and 5 times. So as you can imagine, I am completely exhausted, angry, hurt, disappointed and heartbroken. He is a very intelligent man and is well traveled. I suspect he had problems like I have mentioned as a child but his parents never talked about it. Ive just heard hints of his absent-mindedness. His thyroid is slightly low and the doctor is watching that and he also had some childhood trauma. Also, he has sleep apnea and is on his first week with the CPAP machine. Supposedly sleep apnea causes memory loss and confusion. He has been taking Aricept for 2 months, and I see no change at all. We are now seeing a marriage counselor but he often forgets what was said in the sessions making it impossible to do the work the counselor gives us. We do not have the money to go from doctor to doctor to doctor to find a firm answer on what's going on in his head. I feel like if you have any kind of memory problem, you are labeled as having Alzheimer's or Dementia right off the bat. I don't know exactly what is wrong with him, but I cannot go through this much longer and it's driving him crazy. He says he is terrified of losing his mind. Of course, who isn't. I welcome any comments or advice. Thanks.
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I am reading that you do not want him labeled as having dementia because he has always been somewhat forgetful. But it sounds like his behaviour has progressed beyond being forgetful. He is unable to do his job properly anymore. He is unable to retain new information or learn new skills and is losing his old ones.
Did the neurologist do any testing beyond the MRI? Were you given a bunch of forms to fill out stating your observations?
Mild Cognitive Impairment is another way of saying Dementia. There are quite a few different forms of dementia Alzheimer's being just one of them. They can present and progress differently.
There was a series in McLean's Magazine in Canada a few years ago following a young couple where the husband was diagnosed with early onset Alz, he was just in his 30's. https://www.macleans.ca/news/canada/i-am-mine-this-is-what-alzheimers-is-like-at-41/
This is scary uncharted water for the two of you.
So what do you do next week? Both of you need to update your Wills if needed, put POA for finances and healthcare in place. You will need to have someone other than your husband be your Executor and POA as he does not have the capacity to fulfill those roles.
You need to have a good look at your finances and figure out how you can survive without his income. It is only a matter of time before he cannot lead a service and he certainly should not be doing and weddings or funerals. It is one thing for the congregation to notice his slip ups, it would be devastating for a family if he messed up a wedding or funeral.
Is your housing part of his job? If yes, you need to think about where you can live. If you (not he) wants to stay together, then you may want to look at a community that has levels of care ranging from Independent Living to Nursing Home. He will progress through the different care levels ahead of you, but you will still be close.
You will need to have a conversation with the Church board, or whomever is in charge and discuss what will happen moving forward. They will need to hire a new Minister at some point. They will have to make sure there is another officiant available for weddings and funerals, baptisms/christenings too.
This is not going to be easy. It will be hard on both of you, but you will bear the brunt of the planning and care giving.
After this testing, there should be a debriefing session during which the neurologist gives extensive recommendations for what sort of care is needed, adjustments to employment expectations and lifestyle changes. Medications should be discussed.
Did the neurologist not address any of those issues?
The sort of testing I'm talking about should be covered in full by Medicare.
I heard him give long interview about it, heart-breaking to listen to, describing what he'd gone through as a badly-behaved, stupid, rebellious, lazy, unreliable, selfish child/adolescent/man; and how the weight of the world was lifted off his shoulders when he finally found out what was "wrong" with him - and, partly, what he could do about it.
I'll look it up and see if I can find a link.
PS The documentary he made isn't available but this is a link to a clip from it - see if what he describes sounds familiar? https://www.bbc.co.uk/programmes/p050mmyt
YOUR observations of your husbands lifelong behaviors are a very valuable part of the diagnostic workup. If no one is asking you these questions, there is something wrong with the evaluation.
There are many, many adults who go undiagnosed with pretty severe psychiatric conditions for most of their lives. Your husband's behavior patterns need to be reported to any doctor who is looking at doing diagnostics for current mental health conditions.
One talented geriatric psychiatrist told us that there was real value in family telling him what was new in the patient's behavior and what was "always". When my mother's political views were queried by this doc, he raised an eyebrow at us and my brother responded "yup, that's mom; slightly to the right of Atilla the Hun".
My spouse is 58 and has always been absent minded, disorganized, easily distracted and a poor listener. Ask him a question and he can't answer because he wasn't listening. His mind is elsewhere. I am 100% convinced he has Attention Deficit Disorder. He had a neuropsych exam because he was being fired from his job of 14 years, with some of those issues being the cause. His neuro exam and MRI were also normal (I read the MRI study to be sure.) But the neuropsychiatrist told us that if Attention Deficit (ADD or ADHD) were not diagnosed as a child, my husband didn't have that. I vehemently disagree with that since I was not hearing about ADD in the 1960s, which is when he was a kid. So no treatment but I'm pretty sure Ritalin, Adderall, Concentra or the like would have helped him a lot. But my input and observations were not part of his evaluation, so the psych heard only the filtered history my husband gave.
Your mention of the thyroid was a big red flag. My husband has a family history of hypothyroidism and some other autoimmune disorders. I noticed his mental sharpness declining dramatically a few years ago. So husband finally saw his PCP who did thyroid testing. His result was practically off the chart (TSH over 130.) That is severe hypothyroidism (thyroid failure.) Hypothyroidism can cause very significant cognitive impairment, and requires thyroid replacement medication. Your spouse should be tested about every 3 months and medication adjusted until he's in the therapeutic zone. Followup testing and adjustment of medication can take a while but it's critical to getting that back in order. Hypothyroidism can cause a host of medical problems.
Treatment for sleep apnea might also help some of the symptoms. But get the thyroid addressed. Perhaps an internist/endocrinologist acting as the PCP would be best.
My husband was dxed as an adult with ADD; his inattentiveness was a lifelong problem, but there was very little understanding of those symptoms when he was growing up in the 50s and 60s. Once he was getting an adequate dose of meds he said to me "If I had these meds when I was a kid, my life would have been entirely different".
Here I am, in favor of suggesting a possible diagnosis on a forum, and yours was a good one.
My suggestion is high functioning Asperger's.
People who know, or diagnose this condition can point you in the right direction, after just one interview. M.D, psychiatrist will do.
DonnieJean,
At your husband's age, he could have been skipped over for a diagnosis of Asperger's (on the spectrum of Autism) due to the fact no diagnosis was available until a certain date. (I forget the date).
Dr, Tony Atwood, an autism specialist, had missed his own son's diagnosis!
A book can help you cope with the behaviors you have mentioned
above whether or not your husband is diagnosed, because the behaviors can drive you nuts. imo.
"The Other Half of Asperger Syndrome" (Autism Spectrum Disorder): A Guide to Living in an Intimate Relationship with a Partner who is on the Autism Spectrum Second Edition Kindle Edition
by Maxine Aston (Author), Anthony Attwood (Foreword)
🔹As a pastor, is he so heavenly minded that he is no earthly good?
More common than is realized.
I need 7 hours of sleep per night. For the last 3 1/2 years, I’ve averaged 4 per night.
My poor husband doesn’t understand that I’m awake and asleep in the wrong parts of the day, and I can’t change what my brain is telling me to do, I’ll be watching your responses, DonnieJean.
I had a sleep apnea test because of it, but it wasn’t the whole answer. I’m still searching too.
I’d bet that caregiver stress is part of my situation, for many reasons that most of you already know.
Remember.....whatever is happening here is scary for BOTH of you. Showing him your anger and other negative feelings won't be a helpful tool for either of you to figure out or cope with whatever is happening. If he does have a brain disorder, which does not always show up on MRIs or CT scans, it's like any other organic disease......which can strike any one of us at any time. Love and support for one another will see you thru any obstacles you face.
Best of luck.
Brilliant man. Completely out of sync in personal relationships. Also, about 80% deaf and so he can't hear and doesn't care. This morning I reminded his about the switch to DST, he heard me, he said he 'got it' that church was an hour off. I left for church and he never showed up. Thought he had an extra hour so he went back to sleep.
Stuff like this is EVERYDAY. He leaves something home he needs at work every single day. I refuse to make a 20 mile run to the office b/c he left his cell phone or hearing aids home.
W/O a doubt he has ADD of some kind. 2 of our KIDS have it, and as adults, they recognize and treat it. He refuses.
So he comes across as slightly dotty. He's NOT--but he looks that way when he cannot hear, doesn't engage in conversations or simply forgets to do something.
My OD is working on him to either take a mindfulness class and/or take something for the ADD.
I don't get angry, there's no point. He knows he's making me nuts and that makes him feel badly---but he's been like this for 44 years. I don't expect it will change. Anything super important, I write down and hand him the paper.
His heart dr calls him the 'Absent Minded Professor' which, were it not MY Dh, I'd find funny. It's not, though, is it?
It's certainly worth looking into.
I think you should get him properly tested for dementia. Once that is documented, get your legal affairs in order when he can still sign the docs naming you as his PoA. It is easier to talk to other ppl, especially insurance companies, when he has been medically tested and you have a legal document with you. Without that document, it is HARD to get anything done.
As much as you want, you cannot turn back the clock. Believe me, I tried! You just have to accept reality and march forward.
I am sorry you are going through a very difficult phase in your life.
This is his website for his clinic https://www.healthybrainmd.com/conditions-we-treat
It is time for your husband to stop pastoring. Selfishly I say this for your sake. You cannot continue to keep up appearances, it will break you. It did me. Do not let yourself continue to live in two worlds, the real world at home and the world you step into on Sunday mornings. Remember that God is El Roi, the God Who Sees. Nothing is hidden from Him, so don't try to hide it from others.
He has other Learning Disabilities so it took until he was 15 to get as far as we have in learning his disabilities.
Has your DH ever had his auditory processing tested?
Is it worth a diagnosis now? Maybe not. Are there other symptoms now on top? Maybe? A sudden change actually sounds like dysphasia (from minor stroke?)
With my son, I have to have his full attention to have a hope of communication. He is more focused on visual things so I try to add hand gestures or props too.
Sister is not visual! House a jumble of clutter as she cannot see it. As soon as she puts something down it blends into the background & becomes invisable. I believe this is also a sensory issue, sort of visual processing 'difference'. Sounds like your DH!
You are ruling out what you can medically - I think that's all you can do. Spouses are going to notice any difference way before any scans or tests pick things up - this must be so frightening & frustrating for you both.
I suppose what I would do to make life better right now is to add a bit of silly to lighten the mood "bit of Mondayitis today... and it's Friday..". And look for things he is still good at, washing the car, cooking, whatever it is that he can still feel productive & valued. Experiment with communication. Wave the shopping list around when discussing it. Jingle the car keys when explaining you have to leave in 5 mins for that appointent. See if visual stuff helps?
Mild cognitive impairment or MCI is NOT dementia, but can be the forerunner to dementia. Please note that not all people with MCI develop dementia. It takes very regular testing to gauge when a person has slipped from MCI to dementia, particularly when they have the capacity to showtime, or put on a good act to try to fool a geriatricians testing process. In my mothers case, she would practice for days in advance of her appointments. Although her scores were progressively worse the doctor could not see the crossover during those appointments. You can imagine her surprise when just weeks after a test my mother went into respite care for a fortnight and on the first night was immediately recognised as needing to be in permanent care in a memory care unit.
Dementia is very challenging and very difficult to accept, both for patient and carer. Diagnosing dementia is not an exact science so the best we can do is take the advice of medical professionals who have experience in this field. The choice is yours and your husbands. You either accept the diagnosis or you find the funds to doctor shop to only come up with the same diagnosis that preceding doctors have made.
Also, you mentioned Aricept. The medications for dementia can slow progression of the disease, but do not reverse it. If it is helping, you would not improvement attributed to the drug. Sorry.
I hear your frustration, and it is so difficult. Please consider seeking counseling to assist you in dealing with this situation. There are many faith-based counselors, and some main-stream ones that do not advertise themselves as faith-based. Inquires will help sort that out.
I was thinking if there is a Dyslexia for people with reading problems there has to be something like that for auditory problems.
I also thought of ADHD as I think I also have that but when I was a child it was called..."you're not paying attention and doing your work..I know you can do better"
So I think further testing with these things in mind might help even if it does not lead to a diagnosis it is 1 or 2 more things that can be ruled out.
I also have to wonder was he in the service could this possibly be due to chemical exposure?
My 86yo mother, now in a nursing home, was in a severe car accident at 18 in which everyone else died. She was thrown from a convertible and she was in the hospital for 6 months with broken everything. She was not a good mother -- not very loving, quick to judge and impossible to be around if things didn't go right. I've only thought about this connect to a TBI in the last couple of years. Too much story here to recount.
I just did some googling and a couple of sites said that an MRI doesn't always pick up a TBI. One said this: "Because microscopic injury to the brain may be a cause of problems, however, even MRI may not be able to detect any abnormality in a patient with TBI."
It's just a thought. I'm sorry you and your husband are dealing with this.